So bizarre !

Rageddy Anne

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Feb 21, 2013
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Cotswolds
Sorry to have missed so much news, rather busy here with changing medications and all that that entails.:eek::eek:
Just had to share the latest confabulation....almost as good as Ann's MIL.

MY HUSBAND WAS, APPARENTLY, IN TWO AIR ACCIDENTS YESTERDAY MORNING, AND WAS VERY WORRIED ABOUT GIVING EVIDENCE TODAY AT THE BOARD OF ENQUIRY....THAT WAS BECAUSE HE'S BEEN IN SO MANY AIR ACCIDENTS AND THEREFORE HIS EVIDENCE WILL BE VERY IMPORTANT SO HE HAS TO GET IT EXACTLY RIGHT. Yes, he did fly in the RAF, but was never in an accident! Bizarre indeed.

Haven't been able to read back but hope MIL is being well looked after, and Ann and family are not being dreadfully overloaded by the system....

Best wishes everyone.
 

Onlyme

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Apr 5, 2010
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I hope that Mr Mac manages to stand firm and servive the onslaught of guilt thrown at him this evening.

Disgusting doesn't even start to describe the treatment of Mrs Mac Snr.
 

Spamar

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Oct 5, 2013
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Suffolk
OHs variation (concentrate now!) was that he saw the great train robbery and the bloke that carried it out and this guy lives next door ( or down the road or in the village) and he's recognised OH and knows OH knows and he's going to kill OH and we must phone the police NOW!!! Not tomorrow, not in a minute, NOW.
And very insistent he got as well! And so it got embroidered!
Where do they get these things? It hadn't been in the news at the time, btw.
 

Ann Mac

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Oct 17, 2013
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Evening all,

Slugsta, I hope that whatever help is on offer materialises soon, so you can at least have chance to sort out your Mum's meds, hun - I used to worry like mad, more about il taking too many pills (she had a trick of 'borrowing' the next nights sleeping tablet at one stage, which obviously led to all sorts of confusion) than I di about her missing the odd dose :(

R-Anne - a very bizarrer confabulation! Its still completely throws me when the tiniest bit of 'fact' (as in your OH flying in the RAF) can be built upon to create such fantastical tales. At the moment, a lot of Mils stories revolve around why she is in hospital (on the occasions when she accepts that she is in hospital, that is!) - she fell over chasing a lorry; the man with the stick knocked her legs from under her and left her unconcious; she fell over on the boat coming over - the 10 past 4 ferry, it was; She must have been allergic to that wasp-thing that stung her; he Doctor (naming an old GP who passed away many years ago) sent her in for a rest because she was exhausted looking after all the children. We can get several different 'reasons' for her admission in the space of an hours visit. I hope the medication changes are or will be worth all the stress and effort that they take, hun xxxx

Maureeen, yep, the stairs are Ok for a stair lift - we actually did a lot of research on this several months ago. We can alos have ceiling hoists fitted if needed. DC taking her - hmmmmmm, sort of yes, but almost certainly only a short term measure as they are not geared to EMI nursing, which is what the consultant, CPN and the like are saying she would need. No room downstairs - we are semi 'open-plan' with one room leading off another. If DC can't take her for day care, then there is one alternative in the area - but for a lot of reasons, its not an alternative that either OH or I are particularly keen on - however, we accept that if push comes to shove, then it might be the only option :( Mil has had 'social care' support staff before, so I assume that something similar would be on offer. And - if needed - there could be up to 4 carer visits a day. We think that if we get to that stage and she is still here, then we would have to pay (or rather Mil would) for extra visits in order to save my back. I have never heard of any sort of a sitting service being on offer :(

dotty, if she qualified for CHC then yep, I guess we could get more care in at home - however, CPN and Consultant, as well as at least 1 social worker and a 'senior' from adult services have all told me that getting CHC is so near to being impossible that its unlikely, despite the consultant and others backing the need, that she would get it :(

News about meeting. According to OH an almost complete about face on the part of the hospital. It seems that the gunmen and gangsta's (or something very similar) have caught up with Mil in hospital. The meeting today was all about how paranoid and distressed she gets. I guess they had to see it for themselves, our word and the word of DC evidently wasn't enough - but it seems that seeing it for themselves has finally got the message across. Its now 'No way' is she ready for discharge and they have at last started to do something with the meds. Its taken nearly 6 weeks and repeatedly being told (not just by us and DC, but hands on nurses from the ward) to convince them that we are right about diazepam, and they have finally stopped it. Memantine is now down to half its previous dose, and will be halved again before withdrawing completely - they are saying that already she is sleeping better, and that they think the memantine was possibly causing the issues before. Orlanzapine has also been massively decreased. Whislt the withdrawal hasn't helped with the behaviours, they are saying now that the way is clear to try other meds that might help - they named a medication that OH can't for the life of him remember - chlora-something? - an old med which used to be used to treat alcoholism but which sometimes works well fro dementia induced delusions and hallucinations? Anyway, they are trying that. It will be at least anothe 2 weeks till they consider discharge. They sent OH home with a bag of laundry that was absolutely stinking from urine soaked clothing, all piled in together, so I have no idea if it was the pj's or trousers. I have provided them with pull ups (though they insisted they had some on the ward for patients use) but I'll send in more tonight, along with the 2 new sets of PJ's and the nighty I've just bought her. So many of her things seem to have been lost :(

At least now I feel that they are actually doing something for her - I just wish it hadn't been such a stress filled, exhausting, miserable battle to get this far!
 

CeliaThePoet

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Dec 7, 2013
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Buffalo, NY, USA
I think it is "chloralamide" but I can find almost nothing on it. It is generally used to induce sleep, and does a good job at this, but then there's the day to be dealt with. All the medical literature seems to be from the late 1800's! :eek:

Wherever Mil ends up, it has seemed clear to me for some time that she absolutely needs full time, 24 hour one-to-one care and not from you family members. I doubt you'd want this in your house, but it could make less than suitable CH options possible if it could be funded.
 

Ann Mac

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Oct 17, 2013
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I think it is "chloralamide" but I can find almost nothing on it. It is generally used to induce sleep, and does a good job at this, but then there's the day to be dealt with. All the medical literature seems to be from the late 1800's! :eek:

Well, if thats the right one, Celia, I wonder why they are considering it for Mil? OH says not as a prn (from what he understood when they were talking about it) but as a regular daily med? It doesn't make sense, if its the same med as you have found? Especially as they are now saying that she is sleeping 'really well' :confused:

The impression I have been left with regarding CHC is basically, don't bother, its never given :rolleyes: However, if residential nursing is our only option, I guess it would still be a battle that i would take on, or even if she stays at home and we need more support than she is currently entitled too. I've also been told (nearly forgot about this, mentioned in a meeing a couple of weeks back) that respite care fee's in Wales are now to be capped in the same way that day care/social care support is capped - at the time, I didn't really pick up on it, but whilst Mil has a social worker (presuming that she wasn't signed off the books again once the section was put in place) its somethign I should look into, I guess, as apparently it requires a social worker to make sure that the capped fee's are applied?

Hospital, home or nursing home - the list of things to do and chase up never, ever eases, does it?
 

Beate

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May 21, 2014
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London
Why on earth aren't they washing her clothes themselves, and why do you have to provide the night wear? Haven't they got hospital gowns? When OH was in hospital, his own clothes were packed away and he was furnished with hospital PJs.

Sorry, that's all I have to contribute apart from saying how flabbergasted I am about what you have to go through with these nincompoops that call themselves professionals!
 

Ann Mac

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Oct 17, 2013
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Why on earth aren't they washing her clothes themselves, and why do you have to provide the night wear? Haven't they got hospital gowns? When OH was in hospital, his own clothes were packed away and he was furnished with hospital PJs.

Sorry, that's all I have to contribute apart from saying how flabbergasted I am about what you have to go through with these nincompoops that call themselves professionals!

I think its just this particular hospitals policy that on the EMH ward, they wear their own clothes, Beate. I didn't really question it, to be honest, just made sure that absolutely everything that goes in there is labelled - which sadly has turned out to be not enough to stop things going missing. 2 pairs of PJ's, 4 or 5 nighties, goodness knows how many bra's and several assorted tops and trousers currently unaccounted for - not helped by the fact that I have now pretty much lost track of exactly what has gone in, all I can go on is her very much depleted wardrobe at home :( As for the pull ups - well, several times now I've been aware that she hasn't been given them to wear, a couple of times when I've helped her to the loo and when she was on the medical ward she didn't have them - I've politely mentioned each time that she does have some there, that I have provided them. I have had 3 pairs of ordinary knickers sent home for washing - each time wet with urine, and most certianly NOT Mils, as she has only been provided with pull ups - and I've binned them every time, to be honest, as they are not hers and I can't even be sure that its her who has worn them :confused: Replacing nightwear alone today has cost her £30 - she can afford it I guess, but that's not really the point, is it? :(
 

CeliaW

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Jan 29, 2009
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Hampshire
Might the medication be Campral? (Acamprosate)

"Campral
Campral, taken by mouth three times daily, acts on chemical messenger systems in the brain. It appears to reduce the symptoms that alcoholics may experience when they abstain from booze over long periods. These symptoms can include insomnia, anxiety, restlessness, and unpleasant changes in mood that could lead to relapse. In European clinical trials and in pooled data from several studies, Campral increased the proportion of alcoholics who were able to refrain from drinking for several weeks or months."

Most info is about alcoholism but I did find this: http://www.alzheimersweekly.com/2015/01/combine-baclofen-acamprosate-and-you.html
 

Ann Mac

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Oct 17, 2013
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Might the medication be Campral? (Acamprosate)

"Campral
Campral, taken by mouth three times daily, acts on chemical messenger systems in the brain. It appears to reduce the symptoms that alcoholics may experience when they abstain from booze over long periods. These symptoms can include insomnia, anxiety, restlessness, and unpleasant changes in mood that could lead to relapse. In European clinical trials and in pooled data from several studies, Campral increased the proportion of alcoholics who were able to refrain from drinking for several weeks or months."

Most info is about alcoholism but I did find this: http://www.alzheimersweekly.com/2015/01/combine-baclofen-acamprosate-and-you.html

I'll try and get the right name when I next visit, and let you know Celia - its definitely not something that OH says he has heard of before, although he can't remember the exact name. He and youngest are at the hospital with her now, visiting - youngest has sent me a couple of messages saying that poor Nana is really worried and upset because of all the people trying to kill her - and she also keeps telling OH off, insisting he has been 'combing his eyebrows again'!
 

Onlyme

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Apr 5, 2010
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UK
Chlordiazepoxide? I think Mum was on that - I know it as Librium.
 
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Spamar

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Oct 5, 2013
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Suffolk
If it's Librium, I took that for a while the first time I had a bit of a breakdown, 40 years ago. I remember when I was back to normal throwing the whole load of pills away so I wouldn't be tempted if I ever sunk that low again.
 

dottyd

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Jan 22, 2011
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n.e.

Ann, just skimmed this as its late but from our Dst meeting your mum sounds an ideal candidate for CHC funding.
You need to watch the Luke Clements video.
It's brilliant.
Will write more tomorrow but I know you're up early so try to watch ASAP

A well managed need is still a need and your mil only has to have challenging, intense and complex needs...I think that's the three key words...and she certainly has those.
My mum was under a Dols and your mil is sectioned...all those will stand in her stead.

Watch the video, don't skip it...it's important to get the history ;-)
 

Ann Mac

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Oct 17, 2013
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Morning all

I've run all the suggestions passed OH - and had a blank look and an 'I honestly can't remember' in response, lol - I'll hopefully get into the hospital in the next day or so and find out for myself what it is they are trying her on now. Having stripped back her meds (finally) to the point they are at now, I'm guessing its become fairly clear that she does need 'something' to help her, that just taking everything away hasn't helped. OH says that at visiting last night she was very paranoid, advising that 'Ann doesn't go to that place that I go to, because they will get her and it isn't safe', insisting also that the 'people from there' were out to kill her and she was scared. She couldn't really enlarge on or explain who these 'people' were, but seemed to expect him to know anyway. It sounds like withdrawing the meds hasn't really changed the delusions, the fear or the paranoia at all :(

Dotty, found the video on line, and hoping to grab an hour to watch it in peace later - thanks for that xxxx

Still a fair bit of discomfort from my stupid hip. Checking on line, found nothing but conflicting info on the results and outcomes of platelet injections. Some sites say it can take 3 - 6 weeks to recover and before you see improvement, some say you should see a difference (if its going to make a difference) within 2 - 3 weeks. Some say that local anaesthetic should be given, and I found one site that said it shouldn't as it might lessen the effect of the injection. The majority of info I've found relates to it being given to treat sports injuries, tennis elbow and the like. The discomfort I'm feeling is very much around the injection site, but there are no swellings or lumps, or discolouration to account for it. And I think my knee is sore simply because the hip pain is possibly causing me to walk in a way that's putting pressure elsewhere. Couldn't even get through to the surgery yesetrday and in the end, gave up and actually went back to bed for a few hours, as I was so tired. I had another not so good night last night, so will try the GP again this morning.

Hope you all have a good day xxx
 

dottyd

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Jan 22, 2011
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n.e.
The video is in 6 sections if I remember correctly. It's only an hour. Prof Clements is a lecturer at Cardiff university and the video is just him talking so it's not airy fairy. Just hard facts.
Make notes as he talks to refer back too.
I'll be watching it again for mums review next week. The Dst meeting is a tool for collating info . It's not meant to be a measurement of the person and there's 13 sections ( it may be twelve) on which a person is assessed. The last section is where you put any other behaviours that aren't categories in themselves. Mum scored low on eating/ choking but high on behaviour/ aggression.

The mantra is a well managed need is still a need. Your lo should demonstrate challenging, complex and intense needs.

You need to have read mils notes. I photographed them with my iPad as there were pages and pages which I read at home. Have examples written down to illustrate your points.

Following the historic coughlan case you do not need to have to be in a care home or hospital to trigger nhs funding. Although scotland changed that ruling last year and you do have to be in a hospital I believe. Also Pam scored low across all the descriptors despite having severe needs and the judge said common sense needed to prevail...thank god!

I think you need to look at yourself from a holistic point of view. If 100 per cent is someone physically and mentally well and in balance where would you put yourself on that scale.
For eg if you take physically would you might say taking back, knees and hip into consideration 60 per cent. Emotionally and mentally say 50 per cent. Giving you a total score of 55 per cent. Then ask the question , how will that score be affected if mil comes back and we have no extra help. Physically will it go up or down. Mentally and emotionally..will it go up or down.
They play a numbers game and so can we. When you are not starting off at a 100 it's very easy to see how quickly the added strain will take its toll.

I think if you can secure CHC funding to buy in the extra help then you have that third choice.

Personally ( with my counsellors hat on, where I was used to evaluating how people were doing) I honestly don't think you are physically and emotionally well enough to take on the challenge of your mil without it having severe detrimental effects on your constitution.

There's a lot to take in there Ann .

Anyone not in Ann's situation yet I advise them also to watch the video. Forearmed is forewarned and it's highly watchable, clear and concise.
 

jugglingmum

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Jan 5, 2014
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Chester
Dottyd - I've not really followed the CHC threads(my mum is at the moment a long way off - I know things can change rapidly) but that is a very clear explanation.

Ann there is a thread that Stanley started about CHC funding.

http://forum.alzheimers.org.uk/show...lthcare)-support-thread&p=1277445#post1277445

I've not followed it but it may be helpful.

I know Stanley obtained CHC for his wife and she is at home, I've also seen comments that some CHC specifies the hours of 1 to 1 required.

I'm still a bit confused on the difference between CHC and s117. I understood from posts on here that if you are discharged under from a Section 3 in hospital, s117 funding has to follow, although not sure if this is as generous as CHC funding. I'm sure someone on TP will know.

Day off today, meant to be doing washing - and it's raining, I had 4 loads to do! No tumble dryer, hopefully will pick up later.

Was not a happy bunny in work yesterday, have phoned HR this morning as just needed to speak to someone, and was either that or an employment lawyer. I feel a lot better for my rant and they will phone me back later.

As part of this I have realised that one of the people involved has been causing me issues for a while which has coincided almost entirely with issues with mum and dementia, I'm now wondering if it is actually the work issues that have been dragging me down. The person concerned is leaving and the other person has declared they are planning to leave. I do like my underlying job but have always been rubbish at office politics and let it get me down quite easily.
 

Grace L

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Jun 14, 2014
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NW UK
Morning AnnM ...

I'm glad that MiL delusions are being witnessed, as I was glad when my husbands were.
I really did think they thought I was making it up so I could have a break !

I hope your hip feels better soon Ann xxx


I didn't have gunmen with my husband, but he had several times been in some kind of traffic accident.

One time, his shoulder was really sore (he dislocated it having a fit) but he clearly remembers
rolling down an embankment on the motorway , and falling out of the back.
Van was navy blue, he was hitchhiking with xyz..... on his way to ......
He thinks his memory problems started when he banged his head.

Back neck (another fit), he had been in an accident in a Taxi, but it was OK as he had managed to claim
£3k compensation. He was on his way back from the 'offie'.
Husband not a drinker (well, not much) , and never claimed anything....

Another time, he had helped someone push-start a car.... and slipped in the mud.

A carer I met (she a widow too), her husband had been in the Navy.
His delusions involved water rescue , submarines, flying, parachutes .... some of them possibly true.


Off to see Mil this afternoon. I'm having a tidy, wont risk trying to throw things out.
The plan is to clear a path so she can walk around the dining table without falling over a carrier bag of 'stuff'. If I can clear boxes of books, hopefully we will be able to open patio doors.

'Stuff' is going in the garage (also full) in large plastic storage boxes I've bought her.
If I try and lose a few things she will get upset, so I'm aiming for the garage ....

Take care xxx